By Mylika Scatliffe,
AFRO Women’s Health Writer

Randy Peters is 76 years old. Originally from Trinidad, he now lives in New Orleans, La.  He’d always maintained an active lifestyle until one day in 2018, when he realized he was struggling to climb the stairs during a visit to his daughter’s house.  

He quickly became extremely short of breath, alarming his daughter enough to rush him to the hospital.

One emergency room visit later, he was diagnosed with congestive heart failure and, after a battery of tests, a more specific form of heart failure called transthyretin amyloid cardiomyopathy, or ATTR-CM. 

“I was flabbergasted,” said Peters.

“I was always an energetic, active person, exercising and in the gym.  This diagnosis was a complete shock to me,” recalled Peters.

After his experience, Peters now wants to warn others who are at risk like he was.

Voices for the Heart

Voices for the Heart is an initiative led by biopharmaceutical giant Pfizer, dedicated to raising awareness about ATTR-CM in the Black, African-American, and Afro-Caribbean communities. Through this initiative, Pfizer, is partnering with community organizations across the United States to develop educational programming, local outreach events, and helpful resources.

The American Heart Association confirms that ATTR-CM is an underdiagnosed and potentially fatal disease, characterized by deposits of amyloid protein fibrils in the walls of the left ventricle, the main pumping chamber of the heart.

ATTR-CM causes heart failure among the African Americans and Afro-Caribbean population. Pfizer, Inc. has been working with partners in Baltimore, Md., and surrounding areas, as well as throughout the United States to sponsor events to raise awareness of this serious and often misdiagnosed condition.  On February 25, Peters was the special guest at an event with the Black Nurses Association of Southern Maryland. 

Dr. Jannae White, DNP, CRNP, a nurse practitioner at Ascension St. Agnes Heart Failure Center in Baltimore, Md. led the discussion.

“ATTR-CM is a serious condition and early diagnosis is most important.  There are two types of ATTR-CM and symptoms may be overlooked or mistaken for other causes of heart failure, and some symptoms can appear entirely unrelated to heart failure,” said White. 

“In ATTR-CM, the amyloid protein is made of transthyretin. This protein makes the heart weak, damaged or stiff, and it doesn’t pump blood as well as it should, usually worsening over time,” White said.

White continued the discussion describing the two types of the condition, wild-type and hereditary.  Wild-type ATTR-CM is typically seen in White males over the age of 60, is associated with aging, and is not hereditary.  Hereditary ATTR-CM is caused by a gene passed down through relatives, affects both men and women, and typically presents in individuals between the ages of 50 and 60, although it can be diagnosed as early as age 20. Of these two types, hereditary ATTR-CM is more likely to affect Black, African American and Afro-Caribbean communities.

“ATTR-CM is still considered to be a rare condition, affecting about 200,000 people in the United States, or one in every 1,650 people,” said White.

White confirmed ATTR-CM can cause symptoms commonly associated with heart failure including fatigue, irregular heartbeat, shortness of breath, and swelling of the legs, ankles, or feet.  However, there are other red flags associated with ATTR-CM where heart failure doesn’t immediately come to mind. The following symptoms often cause the condition to be misdiagnosed:

  • Numbness, tingling or pain in hands, fingers, toes, or feet
  • Joint pain
  • Ruptured or torn tendons
  • Stomach or gut issues
  • Eye problems
  • Pain or numbness in the lower back or legs

Peters spoke of how he experienced nearly all of the less common symptoms on the list, not fathoming they were in any way heart failure.  

“I was diagnosed with carpal tunnel syndrome in 2014, which I attributed to my work as a college professor,” Peters said. “But I also experienced tingling in my extremities, severe gastrointestinal issues, shortness of breath while jogging, dizziness when standing up, and I tore my bicep while exercising.  When I tore my bicep, I was just told maybe I didn’t stretch enough before my workout or the weights I was lifting were too heavy,” Peters said.  He saw a myriad of doctors – a neurologist, a pulmonologist, an orthopedist, an allergist, trying to figure out why he was having so many health setbacks.

After the battery of tests in 2018, an attending physician in the emergency room who was familiar with the condition suggested he be tested for amyloidosis, which eventually led to the ATTRC-CM diagnosis. However, he first started having symptoms four years earlier around the time of his carpal tunnel diagnosis. 

“I had no idea I was living with heart failure for all that time. I was always active, and like a lot of people, including a lot of doctors, I’d never even heard of this condition,” said Peters.

“The more you tell your doctor, [the] more information they will have to help understand your condition.  Some other red flags for people with ATTM-CR…are losing weight for no known reason and feeling lightheaded when you stand up. Some heart and blood pressure medicines can also make you feel worse when you have ATTR-CM,” said White.

Now that Peters knows about ATTR-CM, he wants to spread the word. “If you have a family history of heart disease or heart failure, have unresolved symptoms, or have been diagnosed with ATTR-CM it is important to discuss all of your symptoms with your doctor and your family. Also, please consider genetic testing if you receive an ATTR-CM diagnosis,” said Peters.

White confirmed that if ATTR-CM is found, genetic testing can confirm or rule out hereditary ATTR-CM and determine if relatives may be at risk.  Genetic counseling before and after testing can provide guidance and understanding of any test results, and what happens next.

“This is a relatively rare type of heart failure, and some medical providers still may not know about it.  If you believe you may have ATTR-CM and your primary care physician isn’t familiar with it, ask to be referred to a specialist like a cardiologist,” said White.

Peters acknowledged he had to make some lifestyle changes and adjustments. “I have to rest more often and take naps, something I definitely was not used to. But I still enjoy my hobbies, riding my motorcycle, and I still spend time with my grandchildren, whom I love very much,” said Peters.

What White wanted everyone to take away from the discussion, is to pay attention to and recognize any symptoms of ATTR-CM and discuss all of them with your doctor as soon as possible.

“Early identification and intervention of ATTR-CM are crucial,” said White.

For more information about ATTR-CM, please visit the following websites: